Posts tagged ‘medicine’
While being part of a well-known and reputable organization can have many benefits, not having a visual identity can be a liability on a website intended to help people. This is the case with the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital, whose website provides little information without exploring. Claire Berman, who is working on a Master of Science in Health Communication at Tufts University School of Medicine, was a student in my Online Consumer Health course and, for her project, redesigned the Benson-Henry Institute (BHI) site. Her process included the development of personas, such as Paul, a 35-year-old Newton, MA resident with a stressful job and a family history of heart disease, who is skeptical about complimentary and alternative medicine (CAM). Paul needs to understand immediately how BHI’s website may be able to help him when viewing he views it for the first time, especially because of his skepticism. Claire developed other personas, and showed that the current site design and structure is unlikely to appeal to them or provide them with the information they are seeking. With BHI’s goal to “improve the health status of site users through mind-body relaxation techniques,” Claire’s recommendations for a different look and content are likely to help them achieve their goals. Read Claire’s final paper, with personas who can benefit from BHI’s content and a competitive analysis looking at Gaiam Yoga, Center for Mind Body Medicine, Mind Body Medicine Center, and Mind Body Medicine.
I gave a talk at the MA Department of Public Health this week and started with a game called Hot or Not. I showed screen shots to get people’s instantaneous reactions, my point being that people leave a site if is not appealing. One of the sites that was considered very “hot” was Lu Xing’s beautifully-designed home page from her final project in Online Consumer Health at Tufts University School of Medicine.
Lu, a graduate student at Emerson College working toward a master’s degree in Health Communication, designed a site, “Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women” that was motivated by “the fragmented information that pregnant women have received about the nutritional value and health risks associated with fish consumption resulted in confusion and misperceptions.”Lu’s aim for to “create a credible and professional website that provides clear fish consumption advice, fish coupons, and fish preparation skills for pregnant women, to help them make informed fish consumption decisions, so that they can have a smart and healthy baby.” Her paper describes the steps she took to design her site. Lu and I welcome your feedback on her well-written and insightful final paper.
Students in Online Consumer Health at Tufts University School of Medicine design health websites for a topic of interest to them or redesign websites for real organizations. Ellen Langhans, a graduate student at Emerson College working toward a master’s degree in Health Communication, chose the management of narcolepsy for her topic. Her goal was “to create a site for people who live with narcolepsy – both patients and their loved ones alike – to help them manage the disorder,” to provide timely information, and to help site members learn from and connect with each other to thrive. Her final paper details the process she went through, which included the development of four personas and a competitive analysis of four websites: two for narcolepsy, Narcolepsy Network and The Stanford Center for Narcolepsy, and two for diabetes management that had similar goals, Diabetes.com and Take Action. Ellen and I welcome your feedback on her excellent and comprehensive paper.
Gary Schwitzer is Publisher of HealthNewsReview.org, where he and his team grade daily health news coverage. He works to improve health journalism with the goal of improving consumer knowledge and decision-making. He was the founding editor-in-chief of the MayoClinic.com site. While his guest lecture at Web Strategies for Health Communication was on health news reporting, I realized that his review criteria seemed equally applicable to any health content and asked him if he agreed:
LG: You critique health news stories and provide guidelines for health journalists; do your guidelines apply to all health writing using the web and social media?
GS: I think our ten criteria could be applied to any form of health communication, perhaps including one’s interaction with one’s own caregiver. They may be even more helpful or relevant for health writing on the web or in social media, where standards may sometimes dip a bit.
LG: Do you have recommendations about how to create titles that accurately reflect content yet are enticing? Looking at recent titles of articles you rated, some are descriptive but some are more sensationalistic, almost what you would expect to see on the cover of Cosmo.
GS: We often see solid reporting that is undercut by a sensational headline. Good journalism, good writing, good communication doesn’t need the sensational title or headline to “sell” it. In TV news, for example, it’s not only the headline that matters but the “tease,” the promotion, the visuals, the introduction. Someone with a publishing concern must take responsibility for the total package of what is communicated.
LG: What about how to write accurate yet enticing, snippets of articles? This is important when the entire text doesn’t appear on a home page and is increasingly important in social media when the number of characters may be limited.
GS: It is possible to convey accurately with balance and with relative completeness even in TV news or in a web “abstract” or in social media. Of course, with the latter, the use of links to flesh out the “completeness” is not only possible but desirable. I learned how to do a pretty good job even within the constraints of TV news during my career and am now trying to learn to do so even with the 140-character constraints of Twitter.
LG: What advice do you have for health communicators who are creating web or social media content?
GS: Content is still king. Substance over flash. Steak over sizzle. There is a tremendous responsibility to get things right on these vital health and health care topics. Increasingly, I see the value and importance of being correct – perhaps at the expense of not being first. We need to understand that there is true harm that can be done with inaccurate, imbalanced, incomplete communication on health care topics. Our first and greatest responsibility is to our readers – not to the perceived style demands of our medium or format within which we work.
Diane Aronson is a Special Government Employee, serving as Consumer and Patient Representatives for the Food and Drug Administration (FDA). Working through its Center for Drug Evaluation and Research (CDER), Diane has served on many of its Advisory Committees and has been a standing member of the Arthritis Advisory Committee. She is Past Executive Director of RESOLVE, the National Infertility Association, Past-President of the International Federation of Infertility Patient Associations and the Road Back Foundation, an on-line service that provides education, medical articles and peer-support about the use of antibiotics for the treatment of rheumatic diseases. Diane has also served as a Consumer Representative for the Centers for Disease Control and Information (CDC) and the National Institutes of Health (NIH).
LG: How did you become a health consumer advocate?
DA: I noticed at a young age that I can be compelled to speak up for others when needed and that this ability can lead to making a difference. My style is to listen carefully and provide support and information, especially where issues of safety or risk are concerned. The path to my health consumer advocacy work started as a result of my own medical issues with arthritis, cancer, and infertility. My rheumatoid arthritis wasn’t diagnosed for years after symptoms started in my late teens. The pain and fatigue were discounted by my physician who told me that I looked fine despite some irregular lab results and took no further action to explore what caused the symptoms. What activated me included the consequences of this approach and a desire to help others who struggle to find successful medical treatment. This perspective encouraged me to volunteer to share my experiences and later, led to paid consumer advocacy work and to my current position with the FDA. Despite past complex and challenging health issues, I am grateful to be healthy and very active.
LG: How did you start working at the FDA?
DA: I learned that the FDA was seeking a Consumer Representative for their Arthritis Advisory Committee and so I applied. They are often looking for individuals who can provide a consumer perspective to their advisory deliberations as well as an interest in and ability to assess medical data. The application process is about six months long as it includes a review for any potential conflicts of interest.
LG: Tell me about what you do at the FDA.
DA: I am asked to serve on Advisory Committees to review drugs that may need an additional review of outside experts. Committee Panels most often include physicians, researchers, statisticians, patients, consumers and non-voting industry representatives. For each meeting, panel members are sent information from the company-sponsor as well as the FDA about the drug to be reviewed. A list of questions is also sent to panel members who are encouraged at the meetings to ask questions and, at the end, to vote on and provide opinion about the drug under review. For me, the position requires the combination of the advocate in me, an interest in science and biology, my past medical experiences, the desire to represent a broad constituency of health care consumers and a general interest to review details and solve problems. It is very gratifying through my research and study before meetings, and especially as a layperson, to be able to contribute a perspective that may not be considered but may be helpful to the discussion. At one panel meeting and due to my research preparation, I found myself advocating for members of the military who might be prescribed a potent drug that was being reviewed. I found that one of the active ingredients was counter indicated with SSIs. Since many in the military are reported to be treated for depression with SSIs, I advocated for a consideration of this interaction on the label should the drug be approved by the FDA. I am hopeful that this kind of a consumer perspective can make a contribution to the deliberations when I raise concerns such as this.
LG: Can you tell me another instance?
DA: I served on committee for a cancer drug which had a regimen of 3 years and included some serious side effects. There was an alternative existing drug with similar side effects, effectiveness and result but with a short-term treatment. I raised a concern that the long-term treatment would be arduous on patients with only a very slight percentage of improvement in the death rate. Although we are asked at panel meetings to review safety and efficacy, I believe that quality of life issues are also an important perspective.
LG: What role does empathy play in your advocacy work?
DA: I leverage my own experiences and understanding of being challenged by a health concern, my broader experience in representing consumers and my desire to improve the quality of people’s lives when they are suffering physically and emotionally from health concerns. In the case of the cancer drug, it was clear to me that no one should suffer longer than necessary from side effects and with little improvement in the primary outcome of death survival.
LG: What achievements are you proudest of?
DA: I have served as a mentor for new Consumer and Patient Representatives and enjoy passing on tips to help with the initial orientation process. I am extremely grateful to have had the past work advocacy opportunities to author countless editorials, articles, book chapters, etc. and to give many speeches nationally and internationally at consumer and medical associations, run conferences and workshops and work on legislation about consumer health care issues.
LG: What direction do you see the FDA moving in?
DA: I am truly in awe at the number of issues that the FDA considers regarding drugs that have already been approved and by ones that are in the pipeline as well as the huge number of medical devices for which they have oversight. Since the passage of legislation (FDAAA), the FDA has been working on enhancing transparency and involving more consumers and patients in their various activities. The social media is now very important as an educational resource. Recently, it has reported on a number of drugs that had been approved by the FDA but now have serious side effects reported which weren’t able to be considered at the time of approval. Examples are a recent one for diabetes and drugs used for osteoporosis. FDA leaders want consumers to more readily report side effects to them via the MedWatch area of its Web site set up for safety information and adverse event reporting. In addition, they hold frequent meetings and Webinars on a variety of topics for patients and consumers and a number of these presentations are available through http://www.fda.gov.
LG: How do your advocacy skills work with family and friends?
DA: Most of my family and friends probably don’t realize the level of involvement I have had as a lay health consumer advocate but some do turn to me and ask for a perspective that they can add to their research and deliberations with their physician. I might suggest resources and strategies but above all provide a listening ear to their concerns and overall experience. I speak up about health care perspectives but realize that in the end everyone has to make their own choice about their personal health care decisions.
LG: What are your recommendations to people who have health conditions?
DA: Read everything; talk to others. Do the research. Seek out credible internet Websites and verify information with published medical articles. Consider joining a support group. Make informed decisions using evidence-based information not just an anecdotal experience about which you have heard. Seek medical professionals who will work in partnership with you and respect your decisions about treatment.
LG: Should everyone who experiences health problems become “activated” and help others in some way?
DA: Advocacy is a passion. You have to have a strong desire to take the time required to make someone’s experience easier and more hopeful. And, you need to come from a position of knowledge so your research and perspective are critical. In addition, you might feel activated towards advocacy at various points in your life and not at others, depending on your current experience. The hope is that education, peer-support and advocacy on behalf of others can contribute to enhancing the health care system to benefit a broad group of individuals impacted by debilitating diseases.